Severe Facial Edema Results

[dianegracely]

I have hypothyroidism and Charcot Marie Tooth disease. I am having severe swelling around my eyes and nose every morning. This has been going on for 8 years. Lately I get chronic ear infections and fluid in my left ear constantly. I just had my ear drained because I couldn't hear out of my left ear any more. When I wake up in the mornings I look like a monster! Look at my profile photo...

I just got the results from my bloodwork Doctor says they are fine, here they are -

T3 - 34 (22-35)

T4 - 6.1 (4.5-12.0)

T7 - 2.1 (1.4-3.8)

TSH - 1.00 (0.40-4.50)

UREA Nitrogen (BUN) - 16 (7-25)

Creatinine - 0.94 (0.50-1.05)

So if they are FINE, why does my face and ears build up with fluid at night????

[gabkad]

From what I have read Charcot Marie Tooth syndrome is not involving the sort of swelling you have. The numbers you've posted are somehow mixed up. Can you double check? Is it T3 or fT3? etc.

Aside from the thyroid: Is it possible that you have a dust mite allergy? Or there is something in the bedroom that causes this reaction? Mould? Animal dander?

[dianegracely in reply to gabkad]

The results say T3 not FT3. These are right from the report.

T3 - 34 (22-35)

T4 - 6.1 (4.5-12.0)

T7 - 2.1 (1.4-3.8)

TSH - 1.00 (0.40-4.50)

UREA Nitrogen (BUN) - 16 (7-25)

Creatinine - 0.94 (0.50-1.05)

As far as allergies, yes I was tested years ago and am allergic to dust and dust mites.

NOTHING else except bee stings.

I bought a hypoallergenic pillow and cover and the swelling has been staying down. BUT I don't know if it is because of the pillow change OR because the doctor drained the fluid out of my ear. I am still swelling a little BUT not near as bad. YET...

[gabkad in reply to dianegracely]

Where are you? Because T7 I haven't seen since the 1970s... as in T3 T4 T7 uptake.

The actually best pillows are downfilled because the threads per inch are so tight they not only prevent down from coming through the fabric but dust mites can't get in. Synthetic pillows trap moisture from the body and the mites love to live in those conditions. Plus the weave of the fabric is loose and there's lots of space for mites to get through.

The mattress needs to be covered in a fabric that also prevents dust mites from getting into the mattress material. It's expensive but high thread counts are needed. Like 800 100% cotton. And the mattress needs to be vacuumed well. No carpeting in the bedroom. You can use cotton mats or whatnot but they need to be something that can be laundered. Broadloom is the kiss of death. Everything lives in it and under it. Curtains are also a problem unless you can take them down and get them either washed or dry cleaned.

Is your diet low sodium, high sodium, low potassium? Extremes can cause oedema.

To me, and I'm not a dermatologist or immunologist, the swelling looks more like an allergy reaction as opposed to a thyroid problem. Myxedema doesn't just go down after a person get up in the morning. It's made of different stuff.

[Clutter]

Diane, can you post the lab ref ranges with those results. They will be the figures in brackets after each results. Lab ref ranges vary across the world so it's nigh on impossible to interpret results without them. The only result I can comment on is TSH 1.0 which is comfortable for most people but it is possible that you need a dose high enough to suppress your TSH to deal with the mucin and fluid.

[dianegracely in reply to Clutter]

OK here are my results with the normal ranges in brackets.

T3 - 34 (22-35)

T4 - 6.1 (4.5-12.0)

T7 - 2.1 (1.4-3.8)

TSH - 1.00 (0.40-4.50)

UREA Nitrogen (BUN) - 16 (7-25)

Creatinine - 0.94 (0.50-1.05)

[Clutter in reply to dianegracely]

Diane, I think the T3 result must be total T3? Although It is at the top of range it doesn't show the unbound T3 available for use in cells which FT3 testing shows. FT4 is low in range which can make it difficult to convert sufficient T4 to T3. Generally, low FT4 will mean low FT3 in which case the person is functionally hypothyroid. You really need to get your doctor to look away from the TSH and increase your Levothyroxine to improve your FT4 but its possible that Liothyronine (T3) only may be more helpful than Levothyroxine in shifting the swelling.

I've never heard of T7. Hopefully someone else will know what that is.

Creatinine and Urea results indicate good kidney function.

[gabkad in reply to Clutter]

I know, Clutter. Who did the testing and where? Not being critical because the testing was done and Diane doesn't really have much option as to what was done. It's just that it's unusual in this day and age.

Back in the 70s the lab did stuff like PBI and uptakes on thyroid but these tests have been replaced with TSH, fT4 and fT3.

Free thyroxine index from Wikipedia:

The Free Thyroxine Index (FTI or T7) is obtained by multiplying the total T4 with Tuptake.[2] FTI is considered to be a more reliable indicator of thyroid status in the presence of abnormalities in plasma protein binding.[2] This test is rarely used now that reliable free thyroxine and free triiodothyronine assays are routinely available.

FTI is elevated in hyperthyroidism and decreased in hypothyroidism.[2]

Patient typeLower limitUpper limitUnit

Females1.8[2]5.0[2]

Males1.3[2]4.2[2]

I don't think the facial swelling in the morning has anything to do with thyroid or Charcot Marie Tooth syndrome.

Weird thing: try real tonic water. If this is an immulogical thing, sometimes the quinine in tonic water is enough to take down the swelling. The alternative is something like Chimay Ale (which is high alcohol so good luck with that...). Quinine is black boxed but sometimes a small dose helps where nothing else does.

[gabkad in reply to dianegracely]

This at least eliminates kidney failure. That's a plus.

[gabkad]

What happened 8 years ago? Did you move? What was it that changed in your environment?

[dianegracely in reply to gabkad]

Nothing changed... I lived in the same home until 5 years ago when we moved to Florida. I had these same problems at my home in Pennsylvania.

[gabkad in reply to dianegracely]

And you don't take prednisone or some other medication that can cause this sort of swelling?

i forget now. You wrote that you hands also swell. What about feet? If not feet, could it be a moisturizer/cleanser that you've used forever but maybe you have developed a weird reaction to it or something changed in the formula?

If let's say you decide to take a long afternoon nap outdoors, does it happen then too?

[faith63]

You could be very hypo. You have not had the right testing done for determining a thyroid problem. Not the ones my Endo's, all 5 have done. You should have free t3, free t4 tests and no one does the t7..your thyroid labs indicate that your doctor is really not Thyroid Savvy, not at all. Any Endo will do all the free's and maybe rt3, here in the US. Can you order your own labs or find a new doctor?

[Reykua]

Please, please get back to your GP and take the photo with you as proof. I think they need to refer you to another ENT specialist as soon as possible. Failing that (if you're losing faith in your GP surgery), please go to a Walk In Centre or A & E first thing in the morning on waking - you may get some more 'specific' treatment that way.

You don't mention if anything from your ear fluid has been sent to the labs for testing. I'm also assuming that you've had some courses of antibiotics and this situation has just not been responding to the various treatments suggested.

The last thing you want is to lose your hearing permanently - not to frighten you.

Do let us know how you get on as this particular symptom is not generally related to thyroid or charcot marie tooth disease conditions. Of course, I may be wrong and will stand corrected if so.

Wishing you all the very best. It sounds like you have a great deal to contend with and the issue with your ears will definitely impact on your balance and exacerbate the difficulties you're already experiencing with your ongoing conditions.

Let us know how you get on if you can.

[dianegracely in reply to Reykua]

So far from all of the research I've been doing everything is pointing to Myxedema. NO the doctor did NOT send my ear fluid out for testing. YES I have been on strong antibiotics TWICE in the past 2 months and they did not HELP AT ALL. AND yes I am worried about losing my hearing, that's WHY I started PUSHING the DOCTORS for answers!

I had the requested CT Scans done yesterday on my chest and neck with contrast. The docs are checking for a block in my vessels. I will know the results of that on Monday when I see the Ear, Nose, & Throat doctor again.

[Reykua in reply to dianegracely]

Great. Sounds like you're on top of things.

I've never heard of Myxedema but will web search it later - always keen to learn.

You mention that your doctor didn't send the ear fluid out for testing. I'm assuming this was actually done by the ENT specialist. If not, why not, especially if they're giving you two lots of strong antibiotics in such a short space of time (I shudder to think what good bacteria essential to your wellbeing have been destroyed in the process).

In my humble experience, specific antibacs are only useful if they're fighting the specific bacteria they've been designed to control/kill which is why there are so many different ones. It may also explain why you've had two lots without success if they don't know the type of bacteria - if any, they're dealing with.

I really hope you get some answers from your next ENT appointment. Understandably, it situation must be a real worry for you.

Wishing you the very best outcomes and do let us know how you get on.

[dianegracely in reply to Reykua]

Yes the ENT doctor is who drained the fluid from my ear. I have no idea why he did not send it for testing. I am going to go see him on Monday (my next appt) and if I don't get any answers I have another doctor to go see. My neighbor gave me the name and phone number of a GROUP of doctors. ENT, Allergy, Endo, etc... I SHOULD be able to get some answers with ALL of them in the group!!! So we shall see what happens on Monday, if nothing, then I am going to see about an appt with these other specialists. It's TIME someone figures this out after 8 years of coping with this and it's getting worse instead of better!!!!

[Hidden]

Would it be wise to have the urine test collected over 24 hours. I have read huge differences between serum results and what is actually in your cells.

[dianegracely in reply to Hidden]

I've had that done in the past and all was normal.

[Hidden in reply to dianegracely]

You look like you've had no thyroid meds in years. If you go online and look at pictures of hypo people before treatment you can see your face has a lot of the same features. These tests aren't accurate and your Gp and Endo should be looking at your symptoms.

I'm trying to think of the formula for dosage, it's only a rough guideline, but usually you need 10mcg of Levothyroxine for each stone you weigh. A stone is 14 lbs. I wonder what your calculation would be?

If it was me I'd be trying either a higher dose of Levothyroxine or an alternative like Armour or Liothyronine. Can you import drugs from online pharmacies to the US?

I hope I don't sound disrespectful, I know how worried you must be

[dianegracely in reply to Hidden]

According to my weight and the stone stuff you are talking about I should be on 140 - 150 mcg of Levothyroxine and I am only on 75 mcg.

[Hidden in reply to dianegracely]

I started my treatment on 75mcg of Levothyroxine, you're supposed to increase by 25mcg every 3 weeks or so until your symptoms improve. I was on 200mg of Levothyroxine for 2 years before I decided to try Armour. Within 2 to 3 weeks my face completely changed, all the swelling went down and I started to lose weight. Your dose is so obviously far too low, and I wonder if the Levothyroxine is working at all for you? My Tsh increased and I felt so much worse on 75mcg of Levothyroxine. It's not all about numbers from the lab though is it Diana, you can see in your face how poorly you are.

[dianegracely in reply to Hidden]

Well I am definitely going to be talking to the ENT doctor about ALL of this at my appointment on Monday!!!! I will let you ALL know how it goes!!! I have been doing tons of research and looking at photos of others with this same issue and everything is pointing to HYPOTHYROIDISM. So I do believe they NEED to up my dosage for SURE!!!

[Hidden in reply to dianegracely]

It makes me so mad Diane when your blood test results over rule what the doctor can clearly see! You sort them out on Monday, you need more meds! Glad you're doing the research, makes you argue better lol! XXx

[Hidden in reply to dianegracely]

PS we all have our own ideal set point for TSH etc etc, it's a very individual thing!

[Hidden]

I really cannot attempt to interpret those blood results except for your TSH. Please ask to have a full thyroid profile done and then re post.

TSH

FT4

FT3

Thyroid antibodies

It would be much easier to assertain what is going on then because there are some very astute posters here who will be able to give you a really good indication.

You look VERY hypo. I swell in the mornings but not to that degree. I am secondary hypo so my TSH has always been low which kept me Poorly for donkeys years because my GP didn't bother to look at the FT's.

Please get new bloods and post. I feel so much for you. X

[helbell in reply to Hidden]

I am swollen in the morning too...fingers and eyes esp.

[helbell]

Diane, good luck with this and please, please follow the advice given. I would be walking into a&e too. They will refer you back to your GP but sometimes it gets the ball rolling and - if you are really lucky (it might take a few visits...and bear in mind they are happy to treat drinking related problems every night) some medics on duty may refer urgently, or even refer you for assessment while you are there...definitely worth a try and your suffering is definitely deserves it!! And I'd be interested to know what exactly does your Doc say about the swelling!!! Has he provided allergy testing, drug reactions, complications of CMT and, or it's relationship to hypothyroidism...and definitely get the full panel done. etc and et all above.

Quickly looking at CMT, all sorts of issues, and hearing can be involved depending on the nerve damage. May I also suggest that it is critical you are getting the best assessment for your CMT status. Do you take steroids for the nerve damage - I'm thinking about the fluid retention they can cause? It might be worth looking at natural support for peripheral nerve damage, if you haven't already done so.

[dianegracely in reply to helbell]

No I am not on steroids.

[dianegracely]

Is there a difference between FT3 & FT4 tests compared to T3 & T4??? I thought they were doing the right testing!!!!!!!!!!!!!!

[Hillwoman in reply to dianegracely]

FT4 and FT3 are the unbound, physiologically available forms of thyroid hormone. If test results don't have the F in front, they show instead the total circulating thyroid hormones, much of which will be bound to protein and unavailable at cell level.